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62 year old mother (L) has Alzheimer's; she was diagnosed 1.5 years ago and is progressing quickly. She has been married to my father (T) for 40+ years and lived in same home for 30+ years. For the past few months, much of the time she believes my dad is a visitor in her home. She refers to him as the "gray haired" T, or as my dad but does not believe he is her husband. At times she believes that there are many people named T. She is also paranoid that things are being stolen and moved within the house due to not knowing who all is in the house (when in fact she loses, moves, and hides things). She gets upset when she rummages through paperwork and sees his name on their bank statements, car registration, etc. and is concerned that he is trying to take "her money" (they have had joint finances their entire life).


Her confusion about my father creates uncomfortable situations and conflict - I am trying to help my Dad not just try to reorient her as I know that approach does not work and that we should not be arguing with her, but am at a loss of what to do during these episodes that are happening more frequently. How do I help him manage this? I try to distract her or move the conversation to another topic but have also relied on a photo album that I put together with photos for them and our family to show how he has aged through the years. Has anyone else experienced something similar and what advice do you have for my dad and I? It is heartbreaking to witness this and I am fearful for his mental health and her well being.

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I googled this as I sense(d) educating your dad may help him cope better and not take it personally, although I certainly understand how devastating this is to him. I feel very sad for your dad in this situation. Below is one article. Perhaps find others. I highly recommend TEEPA SNOW's webinars if you have time (or your dad) to check out her website.
* Perhaps the most you can do is show compassion for your dad as much as possible; and
* Continue to assess, perhaps with MD / social worker, how your mom 'feels' / responds thinking there is a stranger in the house. From her point of view, this could be very frightening to her.
* I applaud you for writing us here. The disease is so very cruel to so many in the family unit. Give your dad a hug for me. Gena / Touch Matters.
Read this:
https://www.verywellhealth.com/coping-when-loved-one-doesnt-recognize-you-97998
In part, it says: Tips on Coping 

Acknowledge the Loss: As with other grieving processes, it's okay, and often necessary, to let yourself grieve this decline in your loved one. You don't have to be stoic, even if you've read up on what to expect and you know the change is coming.

Remind person with dementia: If you sense s/he doesn't recall your name or who you are, simply remind her/him once by saying, "We haven't seen each other in a while. I'm your nephew Sam."

Give Credit Where Credit Is Due: Remind yourself that this is due to the disease process and not a choice by your loved one. It's the Alzheimer's disease, vascular dementia, Lewy body dementia, or other types of dementiathat should take the credit/responsibility for the loss of ability in your loved one. When he remembers your sister's name and not yours, try not to take it personally, even if it hurts your feelings. Blame the disease.

Respond Gently: When your loved one doesn't remember you, your goal is to decrease her/his anxiety or worries, not increase them by pointing out that you've been married to him for 50 years and asking why he doesn't love you anymore. Instead, you can try to change the subject or sing a favorite song with him.

Validation Therapy: If your spouse continually refers to you as his/ her father, ask her to tell you about her dad, what she misses about him, what he looked like, what he did as a job, and what she loved about him. Give her the opportunity to share her memories of him, rather than try to force the issue and make her identify and remember you.

Photos and Videos: Show your loved one older pictures of family and friends to reminisce together. It's likely that she will remember more from long ago and this exercise may sometimes trigger her to recall more recent items as well.

Seek Medical Help: If your loved one's inability to recognize or remember others is making her (NOT you) feel anxious and frequently distressed, if her paranoia is affecting her eating or sleeping, or if she is fearful of you to the point of becoming dangerous to herself or others around her, ask MD about medications or other treatments that can address the cause of these behaviors and decrease her distress. While a physician won't be able to reverse her dementia, medical treatment can improve the quality of life for both of you.
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AllforLea: Firstly, I do not profess to be a medical professional. That said, it is IMPERATIVE that you speak with your mother's physician to possibly seek medication(s) that may attempt to help her with her Alzheimer's and the disturbing thoughts that occur for the patient that can manifest into untruths. The disease of Alzheimer's is very difficult for the FAMILY to witness. You've done well to prepare the photo album. Hugs and love sent.
Llamalover47
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You are doing the best you can; as 'the kid' your dad may not be 'hearing' you when you try to help him understand mom cannot be reasoned with; his wife is, in essence, 'gone' and that must be almost horrifying when her body is still there. It probably produces a cascade of emotions, grief before her actual death, grief at the end of the marriage-as-it-was, etc. You may need to involve a professional, doctor or social worker, etc., if you haven't already, and maybe an AZ support group to help dad understand the facts of this condition. All the behaviors are common to AZ, as I'm sure you've read here; it's confounding for all involved. On a practical level, you folks need to eliminate the 'accidental' discoveries that upset mom...the account names, etc., things like that which contribute to her 'suspicions' as much as you can. The photo album is a sweet idea but again may not be comprehensible to your mom now, the idea of 'age progression', etc. Dad may in fact now become known as 'housemate', 'good friend' who likes to spend time visiting...hard after a lifetime as mates, I realize, but doable. It does not negate the past, but makes room for this 'new chapter'. It is her home, and now dad IS a 'visitor' in her new world; it's still his home, too, and she is the beloved that disease has hijacked, taken hostage', needs indulging until she can no longer live in the family home if/when that day comes. As I understand it, that's why they call AZ 'the long goodbye.'
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You are doing the best you can; as 'the kid' your dad may not be 'hearing' you when you try to help him understand mom cannot be reasoned with; his wife is, in essence, 'gone' and that must be almost horrifying when her body is still there. It probably produces a cascade of emotions, grief before her actual death, grief at the end of the marriage-as-it-was, etc. You may need to involve a professional, doctor or social worker, etc., if you haven't already, and maybe an AZ support group to help dad understand the facts of this condition. All the behaviors are common to AZ, as I'm sure you've read here; it's confounding for all involved. On a practical level, you folks need to eliminate the 'accidental' discoveries that upset mom...the account names, etc., things like that which contribute to her 'suspicions' as much as you can. The photo album is a sweet idea but again may not be comprehensible to your mom now, the idea of 'age progression', etc. Dad may in fact now become known as 'housemate', 'good friend' who likes to spend time visiting...hard after a lifetime as mates, I realize, but doable. It does not negate the past, but makes room for this 'new chapter'. It is her home, and now dad IS a 'visitor' in her new world; it's still his home, too, and she is the beloved that disease has hijacked, taken hostage', needs indulging until she can no longer live in the family home if/when that day comes. As I understand it, that's why they call AZ 'the long goodbye.'
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Hi AllforLea,
All of this is driven by the disease progression. It erases memories from most recent to oldest, so her memory 'timeline' may have reached the point where, to her, it's before she met your dad--she's 20 years old. The brain struggles to keep up by patching together what it can access. Since her neurons are compromised, the information she receives will be random, and her ability to understand and interpret information will be seriously affected. She'll put it together the best that she can...In this case the photo album will not make sense to her. Your idea to redirect is good, but don't redirect to something she's having an issue with. Also try to remove the paperwork and finances to somewhere only your dad can access-it's a trigger for her. A lot of times at this point 'out of sight is out of mind', so find a good secure place to stash things, or move everything to online banking.
I have a couple of things I really like to share because they helped me so much--
This is good reading for anyone who has a loved one with dementia.
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
The Alzheimer's Org. has a great spouse forum that your dad might want to look over. It's not Alzheimer's specific. There were some recent threads from spouses whose loved ones no longer recognized them. There's also a caregiver forum--you might want to search the threads for tips, or post. There are links to resources at the site.
https://www.alzconnected.org/discussion.aspx

Now may be the time, as she's forgotten your dad and is uncomfortable with him in the home, to consider if a memory care facility will be helpful. It will ease the stress for him. I can imagine that she is requiring constant monitoring and he must be sleeping with one eye open. Good luck!
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The stealing is normal for people with cognitive challenges and decline, my dad does the same thing accusing care givers are stealing objects from him, and the money thing is the same, he does not trust anyone including me (I am court appointed guardian and conservator). As you there is no redirecting him. You might want to talk with your mom’s neurologist there are medication that alleviate this challenge but as with everything there are side effect.

I am learning that white lies are OK when dealing with him and What I say to him is that the court is controlling all his expenses and accounts no one can touch his money until DRs send approval for release of funds, with that though your dad might want to change his financial information to be mailed to you or another trusted person. Or storing any financial information in a locked file cabinet?

I feel for your dad and family for having to go through this challenges, it is heartbreaking for families as I am dealing with the same situations and challenges and believe me this illness impacts every family member not only the patient.

Best wishes
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People with dementia are many times unable to communicate their distress or pain. In some nursing homes the use Tylenol for pain in restless or agitated patients, and some times it helps. Because it relieves the pain that was upsetting the patient, pain that they could not recognize and complain about it.
It's the pain killer effect that helps the patient, not the anti-inflamatory effect as some people claim. Tylenol is not an anti-inflammatory drug like aspirin, Motrin, Aleeve, Ibuprofen, etc. (NSAID's), it's only an analgesic. Tylenol is considered a safe drug by many, because it's sold over the counter. However, it will damage the liver if abused. Many old people have a compromised liver.
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What you describe is fairly common among patients with advanced Alzheimer's demencia. There is nothing that you can do. There are no strategies of any kind that work. That sick brain is totally beyond repair. You and your father have to accept it and be prepared for the worst.
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You answered your own question - she has Alzheimers and is gone, gone, gone. She will get worse and it will affect your father more and more and more and will eventually destroy him. Your job now is to take care of him and keep her behavior away from affecting him. Why is this woman at home? She has dementia. Put her someplace where she is cared for but take care of your father if you truly love him. Dementia people do NOT belong with a normal family - they do too much harm.
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What your poor dad must be going through! What you must be going through!
It's time to jive her to a memory care facility. It's not fair to your dad to have to put up wroth this. After bring married all those years, i know its very hurtful to him and he doesn't deserve it. God luck.
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I had the same issue with my parents. My father was in major denial about Mom's Alzheimer's. With them the issue was more of wanting to return to her childhood home in Hungary or see her long-dead mother. But he just insisted on reality orienting her, which of course just upset her. I spent most of my daytime hours hanging around their house, and when I heard them arguing in Hungarian, I would go into their bedroom and get Mom calmed down with some kind of answer that addressed her emotional need without denying her reality. Gradually, my father came to accept that he could not change her alternate reality. He never really did learn "therepeutic lying" though.
I strongly suggest getting your father involved with a dementia spouse group.
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I’m going thru the exact scenario with my husband of 52 years. We were high school sweethearts. Long story short…. Google CAPGRAS SYNDROME. This is what she has. My husband was being seen at YALE New Haven memory clinic for this. It’s terrible and heartbreaking and no matter what you say to her and no matter how many times you try to show pictures or convince her that she is wrong she will never really believe you and may only get more suspicious so the best thing that I found was to sometimes just walk out of the room for a few minutes and then walk back in and sometimes that works because I would walk back in and he would say to me did you see that woman that was just here oh my gosh thank God you’re back. It’s confusing and heartbreaking and I wish you the best God bless you. You may find a lot of information on this condition on WebMD. It’s fairly rare and can come and go. Unfortunately, I had to place my husband in a long-term care facility and now when I go to visit him he knows my name, but still believes that I am his girlfriend and not his wife and he believes that he abandoned his wife and his children years ago which is not the case and he holds a lot of anxiety thinking he did that. It’s extremely sad and difficult to deal with and my heart breaks for him every time I go to see him.I try to remain positive and I’m just thankful that I still have him to see him, love him, hold his hand and I still feel the love there when we’re together even though he does not remember how we met ,where we met, and all the years raising our children together. He does not believe that I’m the mother of his children and thinks that his real wife never comes to see him. I wish you the best this is not fun.💔❤️
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Don't ever take medical advice from anyone online. The purpose of this forum is to share experiences. Always check with your own doctor before changing or trying anything.

I am not at all familiar with any medications for memory. As far as I know there are none that have been clinically proven to improve memory or even slow the progression of Alzheimer's. There are claims that will state "improves memory" or "slows progression" that are often subscription based. All are scams. There are some clinical studies that are occurring, you could make phone calls to the Alzheimer's association to learn about those. Doctors are rarely aware of those.

Always do your own research on legit sites. I have no faith in richson's response.
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TChamp Jan 24, 2022
I entirely agree with you. Alzheimer's and all types of dementias are incurable. They progress until the patient dies. At the present time there are no medicines or mental exercises that can cure or prevent them. Some medicines are occasionally prescribed by doctors that are supposed to enhance the memory in mild cases. However, they have tons of side effects that can be worse than the forgetfulness. They do not slow down the progression of the disease as some pharmaceutical companies claim. Some people think that Tylenol helps the dementia because it reduces "inflammation in the brain", WRONG. Alzheimer's is not caused by inflammation. Furthermore, Tylenol has absolutely no anti-inflammatory effect. Other people think that psychotropic medications should be used. WRONG again. They might be used temporarily as an emergency to control agitation or violent behavior, but any type of psychotropic medicine can make the dementia worse. Anti-anxiety medications affect the memory even in normal people. Anti-psychotics can induce cerebro-vascular accidents in the elderly. It's best to avoid medications of any kind, unless absolutely necessary. The brain of the demented person is extremely sensitive to medicines of any kind, including antibiotics. In centers that deal with dementia patients, they use primarily environmental strategies based in psychology, no chemicals, to manage their behavior.
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My mom had the same problem. It was awful and heartbreaking and part of the sad fact that the brain is mysterious and it’s the disease not the person. Keep saying dad. Not uncle that will confuse her more. But hide papers. Sell her car. And then try to live in her reality and play act when necessary. It’s heartbreaking My mom often thought the old fat man was nice or her kidnapper but not her husband (50 years of marriage). Look into capgras syndrome. I recommend the book the 36 hour day. I wish her drs had told us. Very helpful. A regular geriatric doctor can prescribe Paranoia medicine. That was the word we didn’t know to use. Unfortunately this is the way of this disease and It’s different than a non - dementia person and psychiatrists take 15 minutes and my mom acted perfectly during those 15 minutes - it was so frustrating. With drs she was practically herself. Ugh. We got to the point of her trying to escape that my dad sadly had to find a memory care home. We cried. And then it was the BEST THING EVER. he became a husband again. Not a caregiver or nurse. He got his life back and visited her every single day. They sat and held hands and she thought she was in a college. It’s good to chat with placement options because there are waiting lists. Dad will need friends to call and chat with her to give him respite. I noticed she recognized my dads voice in the other room. She recognized friends voices on the phone. But her vision played tricks. So terrible. But hang in there. My mom got to a more loving docile stage eventually. With a stage of a bit of aggression and swearing (never in her life had she used such language). Hang in there. It’s not her. It’s the disease. My heart breaks for you. But I miss her so much. Yes yes been three years now since she passed. And now I remember only the good times
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Katefalc Jan 24, 2022
Excellent post and yes the book is very helpful.
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I have expertise in Psychology and Alzheimer care for 25 years.

What memory medications is she on, including any to keep her relaxed?
Tell me about her diet, her activities, who is with her daily, weekly, when she goes out and how many times a day/week/month.

Have some name plates made for the bedrooms like Emilie's Bedroom, Emilie's Kitchen, T's Study, etc.

Put picture of everybody she remembers from her earlier life up on the walls in the den, dining room, her bedroom, is she has a sewing room (Emilie's Sew Room), put them in there. And talk to her about the things SHE is familiar with. She should remember your dad as he looked when they met, so use those to show how he grew up alongside her.

Along with that, find out which songs she remembers and likes to sing. Your dad and you, can use those songs as a point of contact to restore her confidence in you both. Learn to appreciate the value of those songs, and sing them as you go into her room. If she sings a song, learn it. It she makes one up, great, learn it and sing it too. Even if it's simply a tune. Record her singing and talking in more lucid moments where maybe she's singing, humming, and your dad and she are talking. Then use that recording so it awakens her that these are those persons. Maybe you and dad play that, and she's curious so she listens, and you and dad sing that song, and she begins to realize that's her and him on that recording and she's having fun with him, and that will put her at ease and learn to facilitate her to join in with you. Many ways to use a tape recording like that; your dad can just play it, saying, Oh look at this. It's you singing. Turns it on and she listens to herself, and then it comes to the part where he began singing her song with her, and now she realizes that's the man on the tape, he's right there,, and the tape shows she was having fun, and the tape doesn't lie. She trusts it.

You can give her lorazepam, most likely, which will help her have confidence in who you guys are. Usually one starts with 0.5 mg daily and increases it over so many months as the need worsens up to 6 mg daily, at which time most doctors will want to take her off of it and replace it with valium.

If she has no liver issues or high blood pressure/heart issues, you can give her an OTC pain med daily. If you love your mother, you will take her off every OTC pain med except two things: if she's not on tylenol, start her on it right away. They have liquid cherry flavor. Use that. Your mother, if she has alzheimer's or dementia, or AD, is suffering from a highly inflammatory condition in the brain, which is causing the brain and body to overwork itself just to catch up with dealing with the inflammation. When other injuries or repairs are needed in the brain, as they occur constantly throughout the human body, including the brain, her poor brain is spending all its resources on fighting inflammation. Tylenol is THE ONLY NSAID THAT GOES INTO THE BRAIN. IT IS THE ONLY NSAID THAT CROSSES THE BLOOD BRAIN BARRIER. I'm going to guess your mother is not a big Tylenol user, am I right? Beleive it or not, if you will tackle the brain inflammation going on in her dear head, the brain is capable to heal itself, just as it does when there is a contusion from a blow to the head.

How much a day? I gave 333 MG daily, half of that at 10 AM and half at 10 PM in a drink of Pedialyte mixed with water or strawberry ensure. (Always keep her electrolytes up, and make sure she's never low on B12.) Every day without missing any. I was able to completely remove my last patient from 4.5 mg Lorazepam daily down to 0.5 mg daily just by adding the Tylenol to fight off the brain inflammation. Don't give more than that. Always give it in two doses to help the body more on a steady stream rather than one giant dose which overloads the system, understand? Just adding that, I turned around an extremely late stage AD patient from 4.5 to 0.5 over 1.5 years instead of increasing her.
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RichCapableSon Jan 24, 2022
I also reduced her Aricept by one third, going from 3 times daily to twice daily, and then watching her begin to be her old self again and say and do things she hadn't done in 5 or 10 years. Look at the science and research it and you should come to the conclusion I'm telling you the truth. The only thing that caused such a massive turnaround weren't all the nootropics or health foods. She still was declining over time, though more slowly. But when I began the tylenol regimen, that made all the difference and I was able to reduce her meds by 1/3rd after 3 weeks. Let me say I started the patient on 500 MG daily placed in 3 glasses for her, seeing she drank each one personally every 8 hours. At the end of the 2nd week I allowed her to refuse the midnight time drink with it, and watched for any episodes during the night or morning after, and there were zero of them. I resinstated the regimen for the 3rd week at which time she refused the midnight drink with it. I allowed her to refuse it, though I could simply have waited fifteen minutes and offered it again, which typically works. But I needed to see if the tylenol was truly blocking inflammation and thus allowing her brain to heal. During those two nights and the two mornings after missing that night dose, she had zero episodes, and when she got up to go potty then went straight back to bed, and she quit her insistence that I come right away to give her water during the day (such as when I was in the bathroom. All that raising of voices and demanding, no matter what I would say, even that I'm on the potty, just a minute, my dear, it was always come right then, or she'd repeat it louder and more insistently, "I want some water" I want some water. I want some water." But all that stopped after the 3rd week on tylenol, aka acetaminophen. and it never came back.

All I can do is tell you the truth. that's the truth of it. Now it's up to you.
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I’m wondering if your Dad could adopt a new persona, with the same name. He could perhaps be an older relation with the same name, who has come to help you with your mother as she is unwell. You could ask her to be grateful to him, as he is being so much help to you. You could call him Uncle T, not Dad, and go along with the charade. As Uncle T, he could still talk to her about old times.

Get all the paperwork out of sight, and tell your father to be glad that your mother likes him, even if she is very confused about the details. It could be good if the charade worked!
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Katefalc Jan 24, 2022
Not a good idea to pretend he’s someone else. With capgras syndrome in full swing she will just become more suspicious. This will also weigh emotionally more heavy on her husband. Trust me, I’m dealing with the same. It’s totally heartbreaking for the entire family. Also, NEVER give lorazepam or valium unless you want a real “ s*** storm”. That is very BAD advice for capgras syndrome. Talk to the neurologist.
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This is so terribly sad for your dad. My mom has the same problem not knowing whom her husband was and didn't know who I was either. This would escalate mom's anxiety and she often wanted him to just go home. She did not want him there. Thankfully, mom went to bed somewhat early which would calm her and she would come out to the living room to just check on things.

My mom took Seroquel, 12.5 mg at about 4 pm each day which helped most of the time. But, there were still those days. Mom's complete disorientation was associated with her Sundowning most of the time.

Put the bank statements away so mom does not have access to them. Do not leave anything out that may cause her anxiety. It sounds like it will become necessary in the near future to place your mom. Have you started that shopping? See an elder law attorney to prepare for protecting assets for dad. Do not delay.
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My grandfather "forgot" that he was married to my grandmother. He always asked if she was married (she was the kind lady who cared for him) since he wanted to marry her. In their case, it was a sweeter form of confusion.

In your dad's case, he is probably resigning himself to the idea she truly does not recognize him any more. Sometimes it is easier to think of it as your mom has had a series of strokes that have robbed her of her memories. Photo albums are a great idea. Please talk with your dad about streamlining their home - or areas that mom utilizes - to cut down on her hiding/forgetting/accusing behavior. It might also help to have the mail sent to a P.O. box or have your dad collect/sort the mail in a room she will not go into (his study?). She will also benefit from a fairly strict routine throughout her days and weeks. The consistent environment and routine should help with her anxiety. If this doesn't work after a trial period of a few weeks, talk to her doctor about a prescription for a mild anti-anxiety medication to help her relax.
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Funkygrandma59 thank you so much for your response. My mother already has increased her anxiety medication so I am not sure if there would be something else specific for paranoia but will bring that up. She has an appointment scheduled with a psychiatrist in early March 2022 (taken us 3 months to get in) and I hope that we may make some headway with adjusting medications with someone who is more experienced in this area. I will share your suggestions with my dad. Thank you.
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TChamp Jan 24, 2022
Alzheimer's is incurable. It progresses steadily and gets to the point when the patient can't stay at home anymore. They need to be confined in a safe area and handled by professional care-givers. Sometimes, they can become agitated and violent. Psychotropic medicines are used for emergencies only, because they are detrimental to the patients. Antipsychotics can trigger cerebro-vascular accidents (strokes) in the elderly. Anti-anxiety drugs make the memory worse. Medications to improve memory are useless when the dementia is advanced. Really, in the late stages of Alzheimer's there is nothing that can help. It's like having reached hospice level.
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This just breaks my heart -- your poor dad.

This reminds me of Barry Petersen, a reporter for CBS news, who did a story years ago about his wife's early onset Alzheimer's. I remember seeing that story long before I ever had to deal with dementia in my own mother, and it made a huge impact on me. All I know is that I'm eternally grateful that my dad didn't live to see my mother "marry" her first high school boyfriend and talk incessantly aoout him while forgetting my dad completely.

As Grandma said above, her reality is her reality, and there's nothing you can do to change that. Your dad needs to go along with being the visitor, but he also needs to get out and be with people who are healthy and functioning. Try to encourage him to get out and do other things.

You can find Barry Petersen's story on YouTube. Search "Jan's Story" to find it. He also wrote a book about it -- Jan's Story: Love Lost to the Long Goodbye of Alzheimer's. It might be helpful to you and your dad.
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AllforLea Jan 22, 2022
Thank you MJ1929 for taking the time to read my post and reply. I appreciate your kindness and advice. I will check out this resource.
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While I know that it's easier said than done, you and your father must now just accept what's going on and go along with her best you can.
While redirecting is sometimes possible, often times it's not as you're finding out. You may want to have your father talk to her doctor about giving her something for her paranoia, and see if that won't help calm her down some.
At this point your father may just always be known as a "visitor in her home," but hopefully overtime she will know him as the really nice visitor in her home who loves her.
Things with Alzheimer's/dementia are constantly changing, so hopefully this phase won't last too long. Just remember that things won't get better until they get worse. That's a line that is used often in my caregiver support group when talking about those with any of the dementias.
I wish you all the very best during this trying time.
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AllforLea Jan 22, 2022
Funkygrandma59 thank you so much for your response. My mother already has increased her anxiety medication so I am not sure if there would be something else specific for paranoia but will bring that up. She has an appointment scheduled with a psychiatrist in early March 2022 (taken us 3 months to get in) and I hope that we may make some headway with adjusting medications with someone who is more experienced in this area. I will share your suggestions with my dad. Thank you.
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